Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Can I Be Gluten Intolerant And Not Have Celiac Disease?

Pig Daddy

Recommended Posts

Pig Daddy Newbie
Pig Daddy
Posted

Can I be gluten intolerant and not have celiac disease? I test negitive for celiac but have all the symptoms pluse maybe one or two really strange ones.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

Yes, you can. My niece (not biological) is an example. She is gluten- and casein-intolerant, but does not have celiac disease.

ravenwoodglass Mentor
ravenwoodglass
Posted

You can also be celiac and test negative. Both need to be just as strict with the diet.

Heidi S. Rookie
Heidi S.
Posted

Yes, Yes, Yes! My mother and sister are celiacs. I and my niece are gluten intolerant. In the case of my niece and I we are very symptomatic, we react within an hour of glutening. My doctor told me that first degree relatives of Celiacs are sometimes the most severe with reactions.

A negative celiac test really means nothing. My niece and I were diagnosed gluten intolerant b/c we do not carry the 98% gene. Either we are the 3% who do not carry the gene but are celiacs or we are just gluten intolerant. Either way a gluten free diet is all we need! I myself are done with testing and have accepted the gluten free diet! Doctors are "practicing" medicine for a reason. Celiac tests are lacking and there are some terrible information out there from doctors about celiacs.

Trust your body and symptoms!

jackay Enthusiast
jackay
Posted

I do not know if I am Celiac or gluten intolerant. I did not have tests done until after I had eliminated most gluten. I will never go back to eating gluten just to have accurate test results.

Gluten makes me very ill. With that being said, I completely avoid it.

K8ling Enthusiast
K8ling
Posted

ABSOLUTELY!! I am! :)

siglfritsch Newbie
siglfritsch
Posted

You can also be celiac and test negative. Both need to be just as strict with the diet.

That is just incredible that all those health problems resolved after going gluten free. My blood tests were negative, but I had been gluten free for 3 weeks before the tests. I'm just staying gluton free also. I don't want to make myself sicker just to satisfy a doctor.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Coolclimates Collaborator
Coolclimates
Posted

Yes. In fact, most people with gluten intolerance DO NOT have Celiac disease. Read "Better without wheat." This book puts a lot of emphasis on people with gluten intolerance who don't have Celiac. Unfortunately, people with gluten intolerance (but not celiac disease) have an even harder time being diagnosed because doctors know so much less about this than Celiac. Also, some people with gluten intolerance actually suffer more than people with Celiac and are often taken less seriously than those with Celiac.

All these terms can be easily thrown around, and this book explains this better. Celiacs also have gluten intolerance. Celiac Disease is just a specific type of gluten intolerance. The only difference is with Celiac disease, the villi are blunted or smooth. For people with general gluten intolerance (but not celiac disease), their intestines appear normal, as does the villi.

glutenfr3309 Rookie
glutenfr3309
Posted

yep! i didn't test positive for celiac through blood tests or a small intestine biopsy but i follow the gluten-free diet. already started to show inflammation in my intestines but the biopsy was negative for sprue. my doctor said had i not caught it this early 20 years from now i most likely would have been positive. i will NEVER go back to gluten!!

mushroom Proficient
mushroom
Posted

Dr. Rodney Ford, New Zealand's Mr. Celiac. believes that celiacs are a very small minority of those with gluten intolerance. I myself believe that you become celiac after you have been gluten intolerant and gluten eating for long enough (although there are the rarer celiacs who will never test positive no matter how long they eat gluten).

ravenwoodglass Mentor
ravenwoodglass
Posted

That is just incredible that all those health problems resolved after going gluten free. My blood tests were negative, but I had been gluten free for 3 weeks before the tests. I'm just staying gluton free also. I don't want to make myself sicker just to satisfy a doctor.

I was only expecting my constant D to go away. When all the other stuff resolved it felt like a miracle.

kayo Explorer
kayo
Posted

Count me in too. My diagnosis has gone like this: celiac, not celiac, celiac, not celiac.

Frustrating? For sure.

I'm in the camp that believes celiac and non-celiac gluten intolerance are the same thing, just varying degrees.

What I know: when I eat gluten I get violently ill. When I don't eat it I feel better. My body is healing and my viatmin levels are improved. Next month will be my one year anniversary of being gluten-free. best thing I have done for myself and Ill never return to eating gluten.

"Better without wheat."

Thank you for this, it's going on my wishlist pronto.

Skylark Collaborator
Skylark
Posted

Dr. Rodney Ford, New Zealand's Mr. Celiac. believes that celiacs are a very small minority of those with gluten intolerance. I myself believe that you become celiac after you have been gluten intolerant and gluten eating for long enough (although there are the rarer celiacs who will never test positive no matter how long they eat gluten).

Ditto Dr. Markku M

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Celiac.com Sponsor (A19):


  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Methylprednisone treatment for inflammation?

      By Colleen H · Posted

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.